Long term health conditions

Finding the right medication

All but three people with long-term conditions that we talked to were taking medications every day. A young man with arthritis is taking seven tablets a day, some to deal with the side effects that come from taking another drug. A young woman with cystic fibrosis said that when she was 12 years old she was taking nearly 80 tablets, including many vitamins, a day; now she takes 6. Some also had a regular routine of physiotherapy exercises (e.g. for cystic fibrosis), dialysis, or IV treatments. 

Most of the young people we talked to said that they coped well with their medications and treatments. Because we talked to people with lots of different conditions, with different treatments, we will concentrate here on 'the taking of' medications, rather than discussing the different drug regimens.

Finding the right medication

Many of the young people we spoke to had tried several medications during the search for their best treatment. A young woman with epilepsy had taken so many different drugs that she sometimes "felt like a rat in a cage". Medications may be changed around in search of the drug, or combination of drugs, that will best help control the condition, alleviate symptoms and minimise some of the side effects. It can take some time to find the drug treatment that really works. It can also be very discouraging to be on an ineffective medication, or getting side effects that make daily tasks difficult, e.g. going to school or even getting up in the morning. Some people had simply refused to continue taking a particular drug because of its effects. The side effects that particularly concerned young people were putting on weight, losing weight, sickness, facial puffiness, fatigue, headaches, lack of concentration and sleep disturbances. Some people pointed out that the side effects listed on the information leaflet are possible, but certainly not guaranteed - so don't let the list alarm you.

A young man with arthritis knew that his medication had not been fully researched in children but felt that it was worth the potential risk of long term side effects in order to be in remission and feel so much better. Even when there is a known risk young people may be happy to take the medications because alternatives do not exist.

The number, or dosage, of the tablets can vary depending on how well you are doing. Some young people said they could tell if drugs were working by how they felt, but they sometimes worried whether they were taking the most appropriate drug or the correct dosage. 

Many of the young people we interviewed stressed the benefits of finding the right treatment. People particularly appreciated medication that relieved them of constant pain or stiffness, allowed them to attend school or university regularly, or helped them feel more in control of the condition. 

Information and instructions from specialist doctors and nurses is often crucial in helping to control symptoms and condition. Not knowing what you are supposed to do, and not having a point of reference to compare with, can make people feel very uncertain about handling medications. Finding a doctor or nurse who can explain things in person and answer your questions in a way you can understand helps. A young woman with asthma told us that she had been given leaflets about her inhaler but did not understand how to use it properly until a specialist nurse showed her. 

Last reviewed July 2017.

Last updated May 2014.


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